I never get tired of hearing or re-telling this story ==>> Jack Klugman, Henry Waxman, and Orrin Hatch
stop making publicizing your disease your end goal. You and the other 350 or 3,000 or 25,000 or 199,999 people with the disease will hardly be heard above the shouts of those advocating for funds for cancer, coronary disease, diabetes, HIV/AIDs and other diseases affecting many medically and/or politically.
And in the current system of new drug development, Big Pharma is going to be more interested in developing treatments for gastroenterological disease (heartburn), STDs (avoidable), erectile dysfunction, safer birth control, cancer, heart disease, and obesity.
Your 5,000 sufferers should collaborate with the 350 individuals with another disease and the 199,999 with another and all of the rest of them to be a large and huge advocacy group for encouraging change. Your illness group may not be the first to get attention if changes are made, but somebody will be and as treatments are developed for one rare disease they might also be applicable to other related rare diseases.
This is clearly a situation in whch cooperating with those with other rare diseases will ultimately yield better results for all than screaming ME FIRST on the Internet in social media.
The existing laws and administrative rules probably do not go far enough in encouraging drug companies to develop pharmaceuticals for rare and orphan diseases. Advocate for better incentives and decreased bureaucracy for developing new pharmaceuticals to treat a few thousand. Maybe even the staid Nobel Prize committee will even make an award to somebody who makes a huge research contribution that advances the development of treatments for a rare disease and top research universities will create endowed professorships for high talented physicians and others who study a rare disease.
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Hans Buskes and Philippe Packu in their recent book on mind mapping raise the issue of the best fonts to use in mind maps for clarity and usefulness.
I tend to agree with their suggestions BUT ONLY when the mind map is developed for general communication to large groups of people with whom the mind map developer probably has little direct connection. This is the typical situation for mind maps shown in books written by “mind mapping experts” for general groups of readers. It is the typical situation in management consulting and professional presentations.
Makes you wonder whether developing mind maps with “standard business” fonts such as Georgia or Tahoma or Arial or Times Roman is an especially effective way to make maps primarily for your own use, especially if you have any types of cognitive impairment or special cognitive needs.
I am much more motivated to work on maps and refer to them and plan from them and keep my schedule in a mind map if the fonts in the mind maps do not look like I have urgent BUSINESS PRESENTATIONS to make.
I like to kick back and use a large number of different professionally developed “hand-printed” fonts which I often match to the topics/content of the map and whatever gets the creative juices going.
You can see lots of examples of using fonts to inspire creativity in the variations among the mind maps presented in the posts in this blog.
Now, let’s generalize these concerns to people with various kinds of cognitive and perceptual impairments (mild cognitive impairment or MCI, early-stage dementia, later stages of dementia, typical aging, learning disabilities, and illness).
Someone with mild cognitive impairment developing a mind map to help in planning an event or making a decision or scheduling may find it much easier, productive, and creative to work with mind maps in various unique fonts appropriate for the topic, the individual’s preferences, or for novelty rather the usual “readable” business fonts. Many no longer work or ever had the opportunity to work among those who develop “management” presentations. “Personal” fonts in mind maps and other visual thinking methods may make them more effective as planning, thinking, and memory tools, especially for those with cognitive impairment.
Of course this is my conjecture based on my own preferences and knowledge of some of the relevant literature on neurodegenerative diseases. To the best of my knowledge no studies have ever proven what the best fonts are for mind maps for different types of people with different types of uses for maps on different days of the week in the winter or summer or even when the moon is full.
To push my creativity, I want my maps to look hand-printed and personal and not like a business presentation or a doctoral dissertation.
Now at the extreme you could always use one of the free services on the Internet for developing your own personal font(s) based on your own printing or cursive writing! I tried. The results are below.
I personally intend to stay with commercially developed hand-printed fonts by pros and try to pass those off as “my own” handwriting. I am sure that I can read their “handwriting” a lot better than my own.
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I’ve been waiting months to be able to purchase the new book “A Practical Mind Map Tester” by Hans Buskes and Philippe Packu.
Dr Buskes and Mr Packu are, in my opinion, two of the “top 100” most creative and influential mind mappers currently working anywhere in the world. The new book does not disappoint as the authors address the difficult question of “what makes a mind map a good mind map?” with an unique approach and much new thinking on the topic.
I will be posting a very detailed review of the book later as I have a lot of interest in this topic. But don’t wait for my review; the books is currently available on the Apple iBooks Store and is a must-read for mind mappers and those who would like to use mind maps effectively.
The first version was published a few posts ago and created in iMindMap 6. The original post has a discussion of the highly credible web sites from which the information in the map was developed.
This second version was created by reformatting the first using some new tools available in iMindMap 7 and capitalizing on the improvements in speed and ease-of-use of tools that had been available in iMindMap 6, but in a more primitive way. In particular, it is now much easier to work with text meaning that pulling text into positions on the canvas ringing the map may be a good way to store data related to the conclusions embedded within the mind map.
The only way I see to develop effective medical treatments and care models for many of the thousands of rare diseases is to pool the RESEARCH resources that individual countries are spending and the data countries are collecting about individual rare diseases and put those research resources under international control for prioritizing research agenda and ensuring public access to ALL results and research data.
Yes, I know the USA (probably the largest resource contributor) Congress will go in front of the television cameras and say that the failure of the United Nations and the disproportionate contributions to a pooled resource fund will ensure failure. They will point to the failure of the world to effectively coordinate collaborative research on HIV/AIDS and point to politics, homophobia, disrespect, and the hatred of American politics by certain national and fundamentalist groups and say we would be wasting our money by letting Africans and Arabs and the Russians and Chinese and Indians and Asians and South Americans collaborate with the USA on research and ensuring that research leads to effective treatments for at least some rare diseases.
Enough already. Let’s rise to the occasion of solving resource limitations in studying rare diseases and get an effective mechanism in place for expanding the impact of admittedly small research efforts by individual countries through international cooperation. I trust the governments of the world to collaborate, contribute as they can, and help us start to get some of these diseases treatable. Disease knows no boundaries.
In the last century we collectively developed very advanced medical research techniques. In this century we need to use these methods to solve all of the medical problems possible by putting aside the nonsense politics and nationalism and individual egos and predatory profits and focus on solving many medical issues and ensuring access to effective treatment world wide.
Here’s a way to start. Any yes, this is a test of our humanity and commitment to universal human rights of which medical treatment is but one. But let’s start somewhere that should be relatively easy to agree on (and let a few hundred angry politicians in the USA know that the world considers them bratty children and cannot tolerate their obstructionist and oppositional behavior).
Click on the image to expand. And let’s start the process of collaboration.
In the past few days I have posted about using mind maps and similar tools to “fight back” against cognitive impairment and then in a follow up post discussed some of the tools that can be used to potentially improve your ability to deal with cognitive impairment.
Today I am posting about paying some attention to the methods you use to communicate and remember and make decisions and express approval and make other appropriate reactions to others. What will YOU do If your mind fails due to a degenerative condition, a disease, the luck of the genetic draw, or because you are so dumb you refused to wear a helmet while riding your bicycle or motorcycle, or even due to playing football and huge traumatic blows to the brain while wearing a clearly inadequate helmet over the course of decades.
You are told (but probably tune it out like I do) that you should plan for disasters ranging from total disability or an earthquake or a hurricane or the election of a Tea Party President to such things as the day your dog needs hospitalization.
Did anyone ever tell you that you should considering learning some alternate ways of thinking and organizing your memories and planning than the ones you have used for most of your life.
What’s more important to you, having a few bottles of water in your basement in case there is a hurricane or earthquake in the neighborhood or learning new ways of thinking or remembering or making decisions that you might want to use now or after your memory starts to fail.
Consider yourself being told to look into this before somebody hits you with a car while you are weaving through urban traffic on your bicycle without a helmet or you learn that you lost the genetic lottery and have early stage X or Y or Z or xx or yy or etc.
I am not suggesting that you abandon the way you have thought for the bulk of your life if that style ia effective for you. I am suggesting that in case you have brain trauma from an accident or sports involvement or disease or start cognitive decline due to a brain anomaly, you know some alternate ways to think and store–retrieve information and make decisions using simple techniques.
I have a very well developed set of skills that has allowed me to have a great career. If one of those parts of my brain that produces good results for me is damaged, I want to make sure that I can switch out the bad memory drive (symbolically) in my head for another one. Or I can replace the logic program that got corrupted by damage to certain parts of the brain with a different method of doing the same thing utilizing other parts of the brain.
So here’s the deal. Take a look at the mind map below and see if it helps you recognize that you should start to take stock of all that wonderful data and hardware for processing it that lies in your brain and figure out how you are going to change the logic board and memory drives if you are unlucky and you need to try to make repairs.
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The design has historically been considered the best way to “prove” that new medical interventions work, especially if the experiment is replicated a number of times by different research teams. By the double blind (neither the treating medical team nor the patient know whether the patient is taking a placebo or active medication) design, investigators expect to negate the placebo effects caused by patient or medical staff beliefs that the “blue pill” is working.
A key part of virtually all double-blind research designs is the assumption that all patient expectations and reports are independent. This assumption is made because of the statistical requirements necessary to determine whether a drug has had a “significantly larger effect” as compared to a placebo. Making this assumption has been a “standard research design” feature since long before I was born more than 60 years ago.
Google the name of a new drug in clinical trials. You will find many (hundreds, thousands) of posts on blogs, bulletin boards for people with the conditions being treated with the experimental drug, and social media, especially Twitter and Facebook. Early in most clinical trials participants start to post and question one another about their presumed active treatment or placebo status and whether those who guess they are in the experimental condition think the drug is working or not. Since the treatments are of interest to many people world-wide who are not being treated with effective pharmaceuticals, the interest is much greater than just among those in the study.
Google the name of a new drug being suggested for the treatment of a rare or orphan disease that has had no effective treatments to date and you will find this phenomenon particularly prevalent for both patients and caregivers. Hope springs eternal (which it SHOULD) but it also can effect the research design. Obviously data that are “self reported” from patient or caregiver questionnaires can be affected by Internet “the guy in Wyoming says” or the caregiver of “the woman in Florida.”
OK you say, but medical laboratory tests and clinical observations will not be affected because these indices cannot be changed by patient belief they are in the experimental or placebo conditions. Hhmmm, Sam in Seattle just posted that he thinks that he in the experimental condition and that his “saved my life” treatment works especially well if you walk 90 minutes a day or take a specific diet supplement or have a berry-and-cream diet. Mary in Maine blogs the observation that her treatment is not working so she must be in the placebo condition and becomes very depressed and subsequently makes a lot of changes in her lifestyle, often forgetting to take the other medications she reported using daily before the placebo or experimental assignment was made.
Do we have research designs for the amount of research participant visible (blogs, tweets, bulletin boards) and invisible (email, phone) communication going on during a clinical trial? No. Does this communication make a difference in what the statistical tests of efficacy will report? Probably. And can we ever track the invisible communications going on by email? Note that patients who do not wish to disclose their medical status will be more likely to use “private” email than the public blog and bulletin board methods.
Want an example. Google davunetide. This was supposed to be a miracle drug for the very rare neurodegenerative condition PSP. The company (Allon) that developed the drug received huge tax incentives in the USA to potentially market an effective drug for a neglected condition. The company, of course, was well aware that after getting huge tax incentives to develop the pharmaceutical, if the drug were to prove effective in reducing cognitive problems (as was thought), it would then be used with the much more common (and lucrative from the standpoint of Big Pharma) neurodegenerative disorders (Alzheimer’s, Parkinson’s) and schizophrenia.
Patients scrambled to get into the trial because an experimental medication was better than no medication (as was assumed, although not necessarily true) and the odds were 50/50 of getting the active pills.
Patients and caregivers communicated for more than a year, with the conversations involving patients from around the world. In my opinion, the communications probably increased the placebo effect, although I have no data nor statistical tests of “prove” this and it is pure conjecture on my part.
The trial failed miserably. Interestingly, within a few weeks after announcing the results, the senior investigators who developed and tested the treatment had left the employ of Allon. Immediately after the release of the results, clinical trial participants (the caregivers more than the patients) started trading stories on the Internet.
Time for getting our thinking hats on. I worked on methodological problems like this for 30+ years, and I have no solution, nor do I think this problem is going to be solved by any individual. Teams of #medical, #behavioral, #communication, and #statistical professionals need to be formed if we want to be able to accurately assess the effects of a new medication.
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Can Big Data/Data Science avoid the train wreck of Big Pharma? I believe that the Big Data disaster will make the Big Pharma issues seem small in comparison.
But the issues will be about the same. A lot of the Big Pharma execs have become quite skilled at “beating the system” using “undocumented science” and many will move to Big Data and employ all of their very “best” moves and tricks. Big Data/Data Science has the potential to hurt the average individual even more than the greediness of Big Pharma.
HubaMap™ by g j huba phd
I have wasted much of my professional life (writing time) since 1985 messing around with fonts and formatting indents and outlines and bullets and placement and TABLES and bibliographies while trying to actually create original content. It was always a lot easier to fool around with the next great font or the indent levels on bullets than it was to focus on the content. WordPerfect (I am that old) and Microsoft Word and more recently Apple Pages were not the great steps forward in productivity they claimed to be. [Before 1985 who ever cared what font text was in or how the bullets lined up? In fact, who ever knew what a bullet was before 1985?] I have come to think in recent years that “office automations” may be one of the lowest circles of hell for content creators.
Like many, I have gotten interested in writing environments and other tools that just let you write and don’t tempt you with a font change or better spacing while you are trying to actually finish writing a creative page. If I could only have all of that time spent changing fonts and styles I wasted over 27 years back, I probably could have written two more books.
So far as I can see, I am not the only one who is seeking to get rid of the distractions from Word and Pages and their ilk; there is a booming market on the Mac for writing environments, enhanced text editors, and simple word processors. I downloaded a copy of Ulysses III today after thinking about it for months and agonizing over the choice between Ulysses and Scrivener. [I did something I rarely do and actually made quite a bit of use of the demo versions of each program.] Within the next few days I expect that I will be brave enough to remove Pages and maybe even Word from my Mac. [Yes, of course I am keeping the backups, I am not that brave!] My initial experience is quite encouraging; as many have found writing in Markup (the enhanced text language of most of the current crop of writing environments) the change is for the better.
At the same time that I have concluded that formatting is not an integral part of the creative process of writing original text, I concluded that formatting IS an integral part of the creative process in mind mapping where it can help develop innovative models and methods of visual expression. I have determined this by using both the most elaborate and creative mind map program (iMindMap) that gives you great creative control over visual thinking and other programs that prepare visuals that look like my pencil drawings on file cards. Color and organic looks and clip art and spatial reorganization are integral parts of the visual creative process and become part of the creation.
A Duh Moment: Stop wasting a lot of time on formatting text materials while you are creating them. Invest your “formatting time” into creating compelling visual models using mind maps or alternatives.
It is all so obvious after you try it.
I think it is fair to say that most individuals will immediately mention loss of memory (specifically Alzheimer’s Disease) as the major component of neurological decline. But there is much more to neurological decline than just grandma forgetting the names of all of her children and forgetting to take pills. Neurological decline is actually a very complex phenomenon and can include such problems as loss of executive functioning (decision making, planning), the inability to communicate through words, losing the ability to track events in time, decrease in mental flexibility and creativity, and general inability to quickly understanding something being said. Some of the diagnoses associated with neurological decline are Alzheimer’s disease, Parkinson’s disease, Dementia with Lewy Bodies, Frontotemporal Lobar Degeneration (Frontotemporal Dementia, Progressive Supranuclear Palsy, Multiple Systems Atrophy. Corticobasal Degeneration and others) as well as accidents and resultant brain trauma from such sources as automobile accidents, football, and failing to wear head protection while on bicycles.
Individuals with neurological impairment have much more complex arrays of problems in brain functioning than is captured by saying that memory is failing.
Since the technique of mind mapping has been associated with learning and memory and creativity, it has been suggested by many as a way for neurologically impaired and those with normal aging to “retain and increase memory.” However the loss of neurological functioning is very general as discussed above, and it is quite likely that methods of mind mapping will prove effective when applied to many different issues encountered by the neurologically impaired.
This mind map shows some types of loss of mental-cognitive functioning that might be helped by using mind mapping techniques both before and throughout the increasing stages of neurological impairment.
Mind maps can be used for much more than just enhancing memory for the memory-challenged. The techniques are also useful for improving communication, decision making, cognitive flexibility, multichannel information processing, calendaring and maintaining daily schedules and self-care, generating new thoughts, understanding the “big picture” (context and subtext), and many other problem issues.
I am going to write MUCH more on this topic in the coming weeks. Next up will be a mind map showing the relationship of types of neurodegenerative conditions.
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I guess it’s just me … I search Google for sites with “psychology mind maps” and I get lotsa pages returned. Of course very FEW of these pages let you know where the ideas, recommendations, and organization comes from. That makes me pretty pissed off.
I have a simple rule for evaluating psycho-pop, psycho-babble, psycho-art, and psycho-schmaltz: if the author (artist, developer) cannot prove to me that the information came from a credible source and is being communicated by a credible source, I assume it is psycho-fantasy and just walk (actually run) away.
Here’s a few things to ask about before you go ahead and change your job, spouse, running shoes, or haircut because somebody gives you some magic MBTI letters, a number on a test published in a self-magazine, or advice that must be right because it appears in a pretty mind map.
I love great psychology content conveyed in an easy to understand manner. I hope I produce some. Most do not produce anything except profits. Know what you are buying (and staking your life on) when you get information from a book, TV, the Internet, text, or a graphic.
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Irv Oii is known to many international news organizations and researchers as a star data journalist. Being a home worker (although home may be the UK, Ohio, the Middle East, Central Africa, Hong Kong, or Antartica) and a fairly reclusive person, nobody seems to have met Irv. Some speculate that he might be a Jewish Asian-American. Others believe Irv is short for Irvelina, a Russian immigrant physician who went to Ohio (or was it Ojai, California) when the Soviet science programs collapsed and turned into the lower funded Russian collaborative efforts with the EU and USA. The collapse of the Soviet Union resulted in the closing of her laboratory in Minsk. Some even think Irv Oii is an acronym.
Irv is thus an enigma and no pictures of her/him seem to exist. An artist’s conception (mine) based on the writings and consultations of Irv Oii on healthcare breakthroughs is shown below. My belief is that a portrait of Irv should hang over the desk of every data journalist and researcher.
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Note: November 2015
I started writing about the importance of the content in the mind map — facts and important information well researched — back in November 2012. For the next few weeks I am intending to repost some of these posts with my updated thoughts about Mind Mapping 3.0 and what I would now call Mind Mapping 4.0. I will introduce Mind Mapping 4.0 after reviewing some of my views about Mind Mapping 3.0.]
It’s fine to put your own notes or feelings or ideas into a mind map that will be for your use or one which will be clearly labelled as you opinion. But, if you want to put ideas into general circulation as “facts,” you need to have done your homework and tie the information in the maps to established research, clinical findings, and expert opinion (and document whose expert opinion it is, whether that of someone else or yourself). Mind Mapping 3.0 was the introduction of high-quality data into this useful method of thinking.
I would categorize the pioneering efforts of Tony Buzan and others to introduce and popularize the method of mind mapping as Mind Mapping 1.0 and the parameterizations and resulting computer programs by ThinkBuzan, Topicscape, Mindjet, and others as Mind Mapping 2.0.
[As I saw it in 2012 and continue to view it in 2015] Mind Mapping 3.0 is the integration of computer-assisted mind mapping methods, artistic sensibility to enhance visualization, AND MOST IMPORTANTLY, substantive, creative, well-documented valid and reliable content of great importance.
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There are a number of things that can be done to cut the cost of healthcare while, at the same time, freeing doctors and others to do their jobs better. These improvements cost almost nothing to implement [if all of the constituencies and politicians do not compete to be King Kong].
Visiting legislator who stumbled across this web page? Here’s your chance to act like a grown-up and represent the people of the world, not drug companies nor major research universities nor individual “researcher” egos and retirement funds.
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The fictional detectives would have been great program evaluators. All looked at all types of data. Miss Marple was a model of pleasantry who could work her way into an organization or group and see it as it was without changing anything by observing. Holmes and Watson — whether in the original books and movies, the Ironman version of the movies, their current BBC incarnation in 21st Century London, or their CBS incarnation in 21st Century Manhattan with Dr John Watson now Dr Joan Watson (for the better) — use Holmes’ razor sharp mind and Watson’s intuitiveness and questioning. Sam Spade, wise cracks, an iron fist, and underlying sensitivity.
Program evaluation is not about conducting research, randomly assigning participants to conditions, or using quasi-experimental designs. Program evaluation is about understanding why programs produce certain outcomes, intended or not, positive or not, unique or not. To truly understand a program quantitative and qualitative data needs to be collected with great attention to the sensibilities, needs, risks, and potential confidentiality breaches of data of program participants, program staff, program administration, funders, and other stakeholders.
I love program evaluation. Every program is unique and at the same time representative of certain classes of human service organizations.
Be a detective. Look carefully and understand the beauty of a well-running program and how to help staff improve a program that is not working as well as it could.
Measure, Find Relationships, Communicate
Decode Events and Naturally Occurring Data
Examine in Detail
This is the first of a series of posts I am making about program-organizational (and individual) evaluation. Much of what I will discuss is not in the mainstream of traditional program evaluation methodology.
My approach is different. It works.
In this first section the point is — obviously — that evaluation is iterative and nonlinear. This led to my first model that EVALUATION IS DETECTIVE WORK several decades ago. [Perhaps that explains my current obsession with all versions of Sherlock Holmes, whether in the original, present London, present New York, or by Iron Man.] At any rate, it seems ELEMENTARY to me that instead of thinking of program evaluation as a linear research experiment with a fixed design (a metaphor that works at best imperfectly), it is more important to treat evaluation as detective work where good rules of evidence must be followed and the evaluator is at fault if all outcomes are not found.
My initial development of the Detective Model in 1992 came from my observation that in much traditional program evaluation the evaluator applies a flawed “research” experimental model and the insensitivity of this approach means that a program looks worse than it is because the evaluation methodology is in error. Who pays for this problem? The program, of course, since the evaluator walks away saying that the “program sucks” and not that the evaluator screwed up. In the Detective Model, applied iteratively and nonlinearly, the evaluator and the program are partners, and it is clear what the responsibilities and level of success each has.
Seems ELEMENTARY to me.
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Every day, the Newseum in Washington, DC, receives electronic copies of many of the world’s newspapers. They print them and post at least one from each US state/territory and many from throughout the world.
The next day they start all over again.
It is amazing to see all of these front pages for one day adjacent to one another. The common and the local; the political and the social-entertainment.
3.16.2013. A smattering of those available inside and outside the museum.
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Position Opening: Physician. Thousands of opening available throughout USA. All specialties. Highest priority for primary care.
Four-year medical degree, several years of supervised post-doctoral clinical experience. Additional research experience a plus. In possession of a medical license within the state of practice.
Proven effectiveness in communicating with ill, confused, poor, disenfranchised patients, many with co-occuring mental illness and/or chemical dependency and cognitive impairment. Fluency in written and oral Spanish, Chinese, Russian, Farsi, Tagalog, and Arabic a plus.
Ability to work closely with a multi-disciplinary team and communicate well with nurses, social workers, allied health professionals, patients, families, insurers, and malpractice lawyers all of whom may complain at any time that the physician asserts too much influence on patient care.
Willingness to work in conditions were salaries are decreasing annually, patient-doctor ratios are expected to be dramatically higher, and one will be subject to working long work weeks, religious and family holidays, and on an irregular schedule.
Ability to work in a larger healthcare system subject to rules of practice detrimental to patient care with unnecessary and inappropriate regulations, attacks from the public as well as politicians and the press, frivolous malpractice lawsuits that require expensive and lengthy litigation, and very high accompanying stress.
Ability to accurately make life-death decisions while stressed, tired, and in non-optimal settings. Willingness to do so for a low compensation rate.
Willingness to maintain licensure and take regular continuing education courses without compensation.
Ability to spend a large percentage of time completing unnecessary forms in order to obtain insurance reimbursement and to avoid frivolous malpractice lawsuits.
Compensation Range: very low to low.
Immediate openings throughout United States.
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We have the technology to mine archival text and numeric databases and present the results visually in ways more people can interpret and use.
Collectively the world has spent billions (perhaps trillions) of dollars on basic medical and scientific research in the past decade.
Enough with a small review of a few studies known to a scientific author.
Show me the results.
A proposed paradigm …
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IMHO, as we used to say in the old days of computer bulletin boards …